Table 1.
Characteristics of the survey response group
| Number of people | % of Response | |
|---|---|---|
| Sex (n = 744) | ||
| Female | 568 | 76.3 |
| Male | 176 | 23.7 |
| Age groups (n = 234) | ||
| 18–34 years | 61 | 26.1 |
| 35–64 years | 129 | 55.1 |
| 65 years and over | 44 | 18.8 |
| State of residence (n = 741) | ||
| New South Wales | 212 | 28.6 |
| Victoria | 182 | 24.6 |
| Queensland | 159 | 21.5 |
| Western Australia | 92 | 12.4 |
| South Australia | 44 | 5.9 |
| Australian Capital Territory | 25 | 3.4 |
| Tasmania | 23 | 3.1 |
| Northern Territory | 4 | 0.5 |
| Role of person answering the survey (n = 741) | ||
| A paid support worker | 6 | 0.8 |
| A person living with a rare disease. | 661 | 89.2 |
| A relative/carer of a person with a rare disease | 74 | 10.0 |
| Other | 0 | 0 |
| Number of rare diseases per person (n = 746) | ||
| 1 | 628 | 84.2 |
| 2 | 93 | 12.5 |
| 3 | 21 | 2.8 |
| 4 | 4 | 0.5 |
| Self-reported health status (n = 743) | ||
| Excellent | 25 | 3.4 |
| Very good | 113 | 15.2 |
| Good | 211 | 28.4 |
| Fair | 256 | 34.5 |
| Poor | 138 | 18.6 |